New, confused, sad and frustrated

[Anonymous]

Changing formulas shouldn’t irritate or aggrivate her situation. Unfortunately the hypoallergenic formulas don’t taste (or smell) very good, so most little ones transition best if you add it very slowly by mixing it with their current formula. For example, if you typically give her a 6 ounce bottle, try mixing 1 ounce of the Nutramigen with 5 ounces of her current formula. I would do that for a day or so, then increase to 2 ounces of the new formula mixed with 4 ounces of the old, and keep gradually introducing it like that until she is completely transitioned to the hypoallergenic formula.

Nutramigen and Alimentum are both good formulas, and either one would be a good choice if you feel your daughter has MSPI. My son couldn’t tolerate the lactose and sucrose in Nutramigen, so we then switched him to Pregestimil and he did very well on it. Pregestimil has the same hydrolyzed protein as Nutramigen, but is also lactose and sucrose free and has a different source of fat for babies with fat malabsorption problems.

Now my daughter on the other hand couldn’t even tolerate the Pregestimil, so we then switched to Neocate which has been a blessing for her (along with a good dose of a PPI medication). Neocate and Elecare are completely elemental formulas that aren’t derived from cow’s milk. There are very expensive, but sometimes necessary for very sensitive little ones.

I know what you mean about not getting anywhere from doctors. I’ve been through reflux and MFPI with both of my kids. Unfortunately I listened to the doctors with my son and just waited for him to “outgrow it”. Since he gained weight so well, my doctor wasn’t very concerned. I was told that it was just colic, don’t worry, it will pass, etc. I even had some people tell me “all babies cry you know”. Meanwhile, my son was so miserable and screamed 24/7 for 7 months straight. That was when I finally started to seek info and help online, and discovered he had MSPI. Switching formulas really helped him. Then when I had my daughter and she started having the same symptoms, I just took matters into my own hands and found so much help here on this forum. If it wasn’t for the help I’ve found on this site and the other great parents here, I’m sure my daughter would have developed a serious feeding aversion.

[Anonymous]

Ok, so here’s where I am today, (as this is a daily thing!) Brynn seems to be completely fine and responding perfectly to her increased dosage of Axid. She slept through the night last night the first time in a month! Today, she’s taken 2 good naps and still asleep now. I gave her YoBaby yogurt as recommend by my doctor today and she seemed to take it well and keep it down just fine.

So far the adjustments I’ve made are working thanks to the few of you that have been so kind as to lend your God-sent advice! I will take steps of switching her formula or trying a new med if I notice she is beginning to be uncomfortable again. For now, I don’t want to upset her applecart, she’s been so happy for 2 days and it has been so wonderful!

[hellbennt]

if she has trouble sleeping tonight (fingers crossed!!! that she won’t, that is!!!) I would say it’s the yogurt. just to give you a heads up…

[Anonymous]

Shut up! The yogurt could be a problem??? It has cultures that is supposed to help with digestion. Not only did my doctor recommend it, but I was taking acidophilus when I was nursing and it seemed to help. I hope I didn’t just do something that will hurt her! I only gave her about a tablespoon.

[hellbennt]

not to worry!!! not to worry!!!

probiotics ARE helpful!

Probiotics, brands used: https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

[Anonymous]

Ok, got it. Thank you! I’ll look into some of those other options. I’m so new at this! I have been an idiot for so long, just listening to my doctor. Kyleigh was so healthy, 5, has never even been on an antibiotic in her life! Brynn comes, reflux, ear infections, sandifer’s and I’m still trying to figure it all out. Everytime I think I have a handle, (only hour by hour) I find oout something else I didn’t realize. I so appreciate your help!

[hellbennt]

I only mentioned it bcse you said you think she might have milk protein issues…so, there are ways to give (milk & soy free) probiotics w/o actually giving yogurt…

Mspi/allergy info(‘main page’): https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=1&TPN=1

Current ear infection/reflux/saline: https://www.infantreflux.org/forum/forum_posts.asp?TID=9001&PID=78373#78373

[Anonymous]

yep, we use a milk free probiotic…. called Country Life PowerDophilus. It says milk free on the bottle. I started it early on after several rounds of antibitiocs to help Ben’s digestion get back on track. He still gets it every day.

[Anonymous]

Probiotics are wonderful! We use Pro-Bio Gold from Kirkman Laboratories, we order it online. It is a high potency, hypoallergenic probiotic and the company states:

FREE OF COMMON ALLERGENS INCLUDING:

Wheat, gluten, milk, casein, corn, soy, yeast, sugar, egg, maltodextrin, artificial sweeteners, colorings or flavorings, stearates, preservatives and salicylates. Designed especially for the sensitive individual who requires a hypoallergenic formulation.

[Anonymous]

So last night wasn’t bad at all. Brynn woke up once at 3:30, her little belly was growling and I gave a small bottle and she slept the rest of the night until 7:30 this morning.

So, I take back that I think she has milk/protein issues. Here’s the thing that has confused me from the beginning with her that doesn’t seem to fit any mold, once I evaluate it.

Here’s her history…

• Born via C-Section at 38 1/2 weeks, 6lbs 8oz.
• Spit up a lot early on while breast fed.
• Diagnosed with Sanderifer’s at 2 mo…..first episode, put on Zantac, I took her off of that after a week of her not being able to move her bowels and then she started Axid.
• Continued to spit up, supplemented with Enfamil AR (milk base) from 3 1/2 to 5 mo, then Formula only after that.
• Had Sandifer’s Symptoms at 4 mo, 5 1/2 mo, 6 mo, 8 mo, and 9 1/2 mo…(last week).
• Vomited violently twice (7mo, 9 1/2 mo)
• 2 ear infections….(not a lot, I’m gathering by comparison, but when your first kid, Thank God, never had 1-it throws you).
• Now she seems fine with the increased dosage of Axid.

I know that none of this may seem to be the biggest deal and my heart breaks for all the little ones that have had to deal with far greater issues, but none of it adds up for me with mine. How could it be just a minor case of Reflux if she has Sandifer’s symptoms? I keep trying to apply possibilities of answers that could connect some of the dots, but there is always something that seems to blow it up.

For instance, I thought maybe she was milk/protein sensative….but the daily spitting up has improved, she seems to have episodes of difficulty that is sporatic. Overall she seems to tolerate the Enfamil AR just fine.

I feel like I’m missing something vitally important to her comfort and health and I just can’t seem to locate it. Everytime she seems to be ok, she has a reoccurance that throws me back to trying find answers.

I’m a Christian, I pray over my children, (not that that makes them somehow exempt from sickness) but I’ve tried to leave this in the Lord’s hands, but simply feel like I’m being irresponsible to do what I may be able to do on my own to help my daughter. After all she is a gift that I am to protect, love and do everything in my power to keep healthy. I just feel like there is something I’m missing to accomplish my most important job! I know it was the Lord that lead me to this site, so I know there is an answer for me somewhere here.

Sorry about the rambling, you all just got my brain dump for the last week!

[Author]

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